What I’ve been ruminating about lately…

We are each responsible for our own peace and happiness. I am learning to stop looking for it outside of myself. Bad things and good things happen to everyone, no matter if you are a “bad” person or a “good” person. The universe harbours no favouritism towards any one of us. I take comfort in knowing that every bad thing that happens to me is random, and that the universe is indifferent to me and unaware of my presence.

Of Birthdays & Blood Drives

This summer, I went to a 50th birthday celebration for someone who never expected to live 50 years.

The celebration was for somebody that I have known for decades. His name is George, and just like me, he has Thalassemia. We receive blood transfusions every three to four weeks, and growing up, we would often receive the transfusions together. He was already a teenager when I received my first blood transfusion as a six month old baby.

George’s 50th birthday was a milestone for every single one of us with Thalassemia. You see, George is the oldest of our Thalassemia patient group in Montreal. When he was a teenager, he was told that he would live only into his early twenties, which was a typical lifespan for a Thalassemia patient at that time.

Thalassemia patients receive multiple blood transfusions, and the excess iron received slowly builds up on the heart and liver, ultimately leading to the death of the patient at a young age. But when I was about 5 years old, a drug called an iron chelator was introduced. I was injected with this medication almost every night for 16 years. It saved our lives. Eventually, the chelator became available in pill form, replacing the painful injections.

My generation is the first to actually live a full, normal life with Thalassemia. George’s 50th birthday is a huge deal for us.

It gives us younger patients hope, and confirmation that we, too, can live to George’s age and beyond.

But we can’t do it alone. In Montreal, there are almost 50 people like George and I, living with Thalassemia. Each of us need a blood transfusion every three to four weeks to stay alive. Every transfusion requires two or three units of red blood cells.

We need you.

There will be a blood drive held at the Cité du Multimédia in Montreal at 111 Duke street on October 22nd. Our goal is 65 donations. Please consider being a donor! Call to make an appt at 1-800-343-SANG or just simply show up between 9 a.m. and 3 p.m.

In Memoriam…

I remember how I felt when they told me that I was pregnant. My first reaction was shock. I had been through a year and a half of pure hell: the gut wrenching pain, the rollercoaster of emotions, the bad reactions to the super hormone injections, the tearful taxi rides to the hospital and then back to work as if nothing had happened. My body reacted horribly to the treatments each time, and each time a treatment failed, I swore it would be the last time I tried. I was beyond my breaking point many, many times, at times even suicidal. The added stress of being off my Thalassemia meds and knowing that my iron levels were rising while I continued to receive blood in order to stay alive was enough to make sleepless, tearful nights the norm.

My husband Jim stood by my decision to try for a baby, even though it was painful for him to see me like that. I knew that I would always regret it if I did not try to achieve something that I wanted so badly. I had grown up believing that I could do anything that I wanted to do. And I did. I went to university, I got married, I worked hard at following the medical treatments, sometimes painful and exhausting, that were necessary to keep me alive and healthy.

Of course, living with a chronic illness, Thalassemia Major, makes having children extremely complicated. With the current generation of Thalassemia patients, women are actually living long enough to get married and have children for the first time. This was never the case before, and so this is all new territory. Some women have attempted it and have succeeded, but of course, every person is different, and the level of reproductive tissue damage varies from patient to patient.

Jim kept telling me that it was a miracle that I was even alive, and that he would be thrilled if he could just have me for life. The thought that the medical treatments and potential pregnancy could cause my health to fail, and that he could eventually lose me, terrified him.

I couldn’t even allow myself to hope that any of this would work. I knew it would crush me if it didn’t, and I was trying to prepare myself for the worst. And then, one evening at work last Fall, the nurse called and told me that my blood test was positive. I was pregnant.

Jim and I were shocked. The odds that this would actually work had been so slight. We went out to supper that night and were in such utter disbelief that we mostly just stared at each other, speechless.

I told a few close friends and family the news, and they were thrilled. I was cautious. I was extremely nervous about the upcoming ultrasound, though I told myself that I was probably overreacting, that the biggest hurdle had been overcome. Sometime within that two week waiting period, I actually let myself feel a bit hopeful and excited about what was to come.

At the ultrasound appointment, the technologist bluntly announced to Jim and I that the growth of the embryo had stopped, and so I was given a prescription to induce a miscarriage. We weren’t at all prepared to hear that, and were both shocked at the news. I cried so hard that I could barely see. We saw our doctor afterward and he told us to wait an extra week, just in case.

A week later, the situation was the same. We were then told to wait yet another week. It was like an act of deliberate cruelty. We both felt that we were going to go insane waiting. I scheduled an extra blood transfusion to boost my hemoglobin level, continued on my pregnancy diet, and continued taking the hormones that made me feel physically ill and depressed. I knew there was very little chance that the pregnancy was viable, but even if there was only a 1% chance, I had to do everything that I could.

Finally, after the third ultrasound, we were told that the pregnancy, at two months, was definitely non-viable. I could stop the hormones and wait to have the miscarriage naturally.

I was living a nightmare. One evening at work, my body started hurting all over. I felt extremely sore and weak, and my best friend, who luckily works with me, sent me home in a taxi and I went straight to bed. The miscarriage started the next day and continued for a few days after that. And then it was over.

Except that it isn’t. Six months later, the thought of what could have been still hurts. Six months later, I still love the potential life that could have been our son or our daughter.

To be, to do. Do Be Do Be Do.

I remember the first time I heard the words.

I was in my early twenties, and in Toronto for a conference. My aunt and uncle picked me up downtown after the last day’s sessions. They wanted to take me to Queen’s Park.

It was an ideal Fall day, the air was crisp and clean (as clean as it can get in Toronto) and dry leaves crunched underfoot. The sun shone and warmed our faces as we happily chatted and made our way down a stone path. At one point, we sat at a bench and continued our conversation for a few minutes, after which my uncle and I got up to proceed with our walk. My aunt stayed seated. She looked up at us and said “You two go ahead. I’ll catch up with you later. I want to sit here and just be.”

I was shocked. I had never in my life heard anything like it. To just be? To sit and do nothing? To be idle?

I grew up in a household where things were always buzzing, where there was always something to be done, someone to help, something to be mended. The phone would ring and we would go, go, go. One thing done, and on to the next. If things were not done in time, then other things would be delayed and we couldn’t have that.

The only time I saw my parents rest was at 4 pm when they had tea and biscuits. It’s still part of their routine, now that they are retired. Even then, it’s just a fifteen minute break, and then on to other things.

I find that I am often the same way. There are always a million things to do, and when I’m not doing any of those things, I’m checking my calendar and to do list to make sure that I don’t forget anything. I feel a sense of accomplishment when I get things done. I feel the raw satisfaction of striking an item off my list.

Coming back to that day in the park, the more I thought about what my aunt said, the more fascinated I became. To just be. Such a simple concept, but oh, so luxurious! Was it possible to be at rest and just be happy in the moment, and feel a sense of how rich our lives are and how lucky we are to be here without worrying about what comes next?

I want to sit here and just be. Those words remind me that sometimes, even for a moment, I need to stop doing and remember that life is not a race.

My Hands

wedding_henna_designMy hands create, comfort, arrange, wash, wave, steer, nurture, type, play the zils. They fall into stylistic form when dancing bellydance or indian fusion. They allow me to navigate the Internet, click on what I like, and serve coffee to my friends.

I often fantasize about having hands with no scars.

The veins on my hands are pierced every three weeks so that I can receive blood. These veins have been used since I was six months old and they have been tired for a long time. The surfaces of my hands are scarred as are the veins themselves.

There are days when my veins are impenetrable, when the nurses have to push the needle against my skin so hard and it is so painful that I feel like I am screaming inside. And then there are days when the needle slides in easily, as if my skin is made of butter. There are days where I feel like a human pincushion, where two or three nurses take turns trying to get my vein, and I just want to cry, give up and go home. On other days I laugh and tell the nurses stories even as they start my IV…those are the good days.

Sometimes the needle goes in too deep, puncturing the vein on both sides, and the vein is blown.

When I was a teenager, I realized how ugly the scars on the backs of my hands were and took great pains to hide them. Today, I show my scars to good friends.

My sister always said that I was lucky to have hands like a piano player, long and slender. When I would come home from transfusion, she would love that my hands were so warm. My husband endlessly compliments my hands and says that they are elegant and beautiful. When I come home from transfusion, he asks where the infusion took place and  kisses my sore hands and wrists.

There’s a comfort in using the same veins for every blood transfusion, just as there is a comfort in receiving your transfusions at the same hospital and having the same nurses start your IV. It’s not a pleasant experience, but every bit helps.

I often try to imagine what my hands would look like with no scars, no history, smooth and even. They would be unrecognizable, not my own.

 

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What I Have Learnt

NASA-Apollo8-Dec24-EarthriseBeing a good person does not depend on whether I believe in a day of judgment.

It is never a crime to question. The real crime is to never question.

I would much rather know the truth, however inconvenient, than to be fed lies to make me feel better.

I take comfort in the general indifference of the universe. When bad things happen, I know that it’s not personal.

 

Nuit Blanche Montreal 2013 – A Photo Essay

Nuit Blanche is one of my favourite times of the year. A night when the city is at its most dynamic and sparkling with life.

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Montrealers know that the best way to enjoy Nuit Blanche is to leave your car at home. The metro was packed with partygoers. Here, a rarely seen view of the inside of the tunnel at Berri-Uqam direction Honoré-Beaugrand.

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We started off at the Olympic park where I took a turn on the giant snow slide. Yup, that blur in the picture is me!

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The crowd gathered round to watch the tuxedoed penguins running around free at the Biodome.

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Then out came the fearsome birds of prey. As the owl stared straight into my eyes, I felt it could see into the very depths of my soul. Brrr.

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After that, it was off to the Quartier des Spectacles to watch my fellow Montrealers enjoying the Air France Ferris wheel and the Urban Slide to the soundtrack of DJs performing at 24 HOURS OF VINYL, providing cool beats for a hot crowd.

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We ended the night at the Society for Arts and Technology where patrons in bean bag chairs played old video games projected onto walls and the 8 bits/chiptune got me dancing. A perfect end to Nuit Blanche 2013.

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All pictures by Jim Royal.

Osmosis Schmosmosis

I just received an email with a deal from one of those Groupon-type companies. It offered a massage, a back exfoliation–and an ionic spa session. I had no idea what an ionic spa session was a couple of hours ago.

I decided to check out the spa’s website to get a feel for the location. (I prefer not to link to them, but you can google their name: Clinique La Source de la Santé.)

I first noticed that the spa was actually marketed as a health centre. I also found a page describing the ionic spa session that had been mentioned in the deal.

Now, what I’m about to tell you is nothing to laugh at, because people spend loads of hard-earned cash on this service and believe that it works. But when I read about this treatment, I could not stop laughing. The claims being made were utterly ridiculous.

So this is the treatment: you put your feet into a foot bath for thirty minutes. But not for the purpose of simply relaxing, or having your pods massaged with jets of warm water, which would feel great anyway after a long day on your feet.

This is how the treatment is explained (the grammar and spelling is all theirs):

Essentially, the IonicSpa functions as a magnet that helps your body to detoxify by attracting toxins! Toxic particles exit the body through skin pores buy osmosis to where they are neutralized and trapped in a charged bath of water! The IonicSpa is care for the immune system; it is revolutionary way to re-balance, reenergize & detoxify the body; treatment sessions re-stabilizes cells of the body so that normal physiological functions run at optimal levels, particularly the uptake of necessary nutrients & the elimination of unwanted waste products.

In addition, this foot bath is supposed to help you lose weight, relieve your seasonal allergies, give you more energy and increase oxygen levels in your body, reduce inflammation, take away your insomnia, reduce stress, restore the immune system and remove heavy metals from your body.

I love that last claim. Gee, what was I doing taking painful deferoxamine injections for 16 years in order to remove excess iron from my blood? All I needed was an ionic foot bath!

Their website also has absurd pictures of people’s feet in these ionic baths, with the water changing colours according to which part of the body the toxins were supposedly coming from (the liver, gallbladder and so on). The toxins were allegedly leaving the person’s body through the dilated pores of the person’s feet! One of the pictures showed coppery coloured water with reddish brown sludge-like particles in it. Pretty gross.

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Because it is just too hilarious not to share, here’s a guide explaining which parts of the body are being detoxified according to the colour and texture of the water at the end of the treatment. This information is derived directly from the website.

COLOR OR PARTICLES MATERIAL OR AREA OF THE BODY BEING DETOCIFIED
Black Detoxifying from liver
Black Flecks Heavy metals especially Iron
Brown Detoxifying from liver, cellular debris and tobacco
Dark Green Detoxifying from gallbladder
Orange Detoxifying from joints
Red Flecks Blood clot material
White Cheese – Like Particles Most likely yeast
White Foam Detoxifying from Lymphatic system
Yellow – Green Detoxifying from kidneys, bladder, urinary tract and female/prostate area
Oily Surface Fatty, lactic, oxalic and uric acids

So how often are you supposed to come in for a treatment to ensure the very best results? This health centre strongly recommends two to three sessions per week for four weeks to start. At a cost of $40 per thirty-minute session, that amounts to… a whopping $480. For. Absolutely. Nothing.

I did some research into the truth about how these foot baths actually produce colour. Livestrong.com quoted Dr. Stephen Barrett of Device Watch, who says that the colour of the foot bath water changes because of “a common chemical reaction, caused by the iron oxide — more commonly known as rust — that occurs when the electrodes in the water break down.” Dr. Barrett also notes that the water would change colour “even if a foot was absent”.

To see an ionic foot bath in action, I dug up a couple of YouTube videos in which experiments were done to see how these foot baths produce such gunky textures and colours. I also found a training video that is probably packaged with one of these ionic foot bath products.

It seems that after these treatments, the people using them believe that they have been cleansed, and that their bodies are now pure. But, as the Voice of Young Science says: “Your gut, your liver and kidneys, your lymphatic system and your skin are more than capable of dealing with everyday toxins.”

I’ll let you in on a little secret. I know of a contraption that you can acquire for less than the price of two of these treatments. You can even pick one up from your friendly neighbourhood Canadian Tire. I, myself, have had one for years! I can guarantee that it will massage your feet and make you feel relaxed and blissfully rejuvenated.

And as an added bonus, your feet won’t be sitting in a broth of rust and sludge.

Voilà!
Foot bath

Are you more alkaline or acidic?

I cannot count the number of times that someone has said to me that something is good because it is natural. Yet, in order for plants and animals to survive, they have to create all sorts of poisons. Every part of a tomato plant is poison except for the fruit. Ginseng is a natural medicine, but can be a blood thinner if taken in too large a dose. Exposure to high levels of ammonia can kill you.

People also tend to believe that naturopathy is a good thing. Well, it sounds nice.

I was recently invited to hear a naturopath speak and decided to take the time to look into this naturopath’s offerings more carefully. Out of curiosity and a healthy dose of skepticism, I decided to check out her website and see what services she offered.

This naturopath offered a pH evaluation that evaluated levels of acidity or alkalinity in the body. The website warned that diseases and “imbalances” occurred when the body was in “too much of an Acidic state”. I searched the web for similar pH evaluation services, and found another naturopathy website that claimed that “balancing the pH is a major step toward well-being and greater health.”

They claim that an alkalizing diet will prevent fatigue, slow the ageing process, help you lose weight, increase your bone strength, be more energetic, and even prevent cancer. Sounds great, doesn’t it?

I looked at some more naturopathy websites and found claims that you can control the acidity and alkaline levels in your body by buying and using their products, whether it be alkaline water purifiers, alkalizing face and body cleansers, alkalizing supplements, or alkaline pH booster drops.

But is it true? Do we really need to worry about how acidic our bodies are? Can we really prevent cancer and lose weight by using products to increase the alkalinity of our bodies? I did some research.

Gabe Mirkin, M.D., who is an expert on health, nutrition, and sports medicine, says:

“Anyone who tells you that certain foods or supplements make your stomach or blood acidic does not understand nutrition. You should not believe that it matters whether foods are acidic or alkaline, because no foods change the acidity of anything in your body except your urine. Your stomach is so acidic that no food can change its acidity. Citrus fruits, vinegar, and vitamins such as ascorbic acid or folic acid do not change the acidity of your stomach or your bloodstream. An entire bottle of calcium pills or antacids would not change the acidity of your stomach for more than a few minutes.”

Robert T. Carroll, Ph.D., who wrote Unnatural Acts: Critical Thinking, Skepticism, and Science Exposed, echoes this sentiment:

“The first clue that (an acidic) diet would be worthless as a cancer treatment is the general principle it advocates: dietary modification can change the acidity of the blood. It’s not true that the acidity of the body can be changed significantly by diet. Whatever food you eat passes through your stomach, which is highly acidic (pH between 1.5 and 3.5), making it an ideal environment for pepsin, the main digestive enzyme, to break down food. Stomach acid pH levels can be affected by the quantity of food you eat, infection, and stress. Eating foods designated acidic or alkaline is irrelevant to affecting pH in the stomach.”

Busted.

It’s easy to want to believe in a miracle, that any ailment we suffer can be healed easily without painful and cumbersome treatment, and that nature can cure anything. Over my lifetime, I’ve received over 531 transfusions. I had to give myself painful injections with an iron chelator from the age of five to the age of twenty-one, and be attached to an infusion pump overnight five to six nights a week.

Would I ever decide to end my blood transfusions and chelation therapy and rely on alternative medicine for a cure? Hell, no. After all, as my beloved Tim Minchin says:

“Do you know what they call alternative medicine that’s been proved to work? Medicine.”

Kiki de Montparnasse – A Book Review

41ygnrFdZBL._SL500_AA300_Kiki’s story touched me to the core.

Maybe it’s because of my love of Paris, a city whose art, architecture, and vibe I can’t get enough of. Or because I strongly believe that freedom is a right, not a privilege. Either way, Kiki’s story allowed me to live vicariously, thrillingly, through her.

Fresh, evocative, and raw, Kiki de Montparnasse teems with life, passion, and tragedy. The graphic novel is beautifully illustrated and puts you right at the heart of bohemian Paris.

What I loved about this book was the historical context that colours Kiki’s life. Kiki lived in Paris during such an exciting time in the history of art, as well as the darker history of World War Two.

KikiThe life of a “poor artist” has alway fascinated me; how they dedicate their lives to creating art, one day living hand to mouth, the next living the high life. Kiki de Montparnasse takes us into the wheelings and dealings of the art sellers, the jealousies between artists, their wives and the models, the scandalous parties, the raunchy cabaret shows…

The story follows the life of Kiki, née Alice Prin, a mischievous little girl born in Châtillon-sur-Seine at the turn of the twentieth century. Raised by her grandmother, Alice grows up poor, but in a house full of love and folly.

Eventually, Alice’s mother sends for her, and they are reunited in Paris. However, the teenage Alice is treated like a burden, and she is sent out to work at menial jobs to help pay the rent.

At 14, Alice is asked to model for an artist, in the nude, for the equivalent of a week’s salary. When her mother eventually finds out, there are fireworks, and the young Miss Prin is disowned. She stays in Paris, continues to model, and soon becomes a muse for various artists, as well as a singer, dancer, artist, and actress. She models for and meets her longtime lover Man Ray, and Tsuguharu Foujita, Jean Cocteau, Moise Kisling, Modigliani, Picasso and other painters and photographers of note.

A free spirit and charismatic beyond measure, Alice becomes a cabaret singer and dancer, often living hand to mouth, at times financially supported by her many lovers. She eventually becomes known as Kiki de Montparnasse, a symbol of the newly liberated culture of Paris.

Funny, heartbreakingly sad, generous to her core, swearing and drinking like a sailor: Kiki lived a remarkable life, a muse to some of the greatest artists in 1920s Paris.